Monday, September 25, 2017

New Job, Birthday Girl, Thyroid Problems, Weight Gain

For the first time in 8 years, I went back to work.  I’ve been saying since Ellie entered full time kindergarten that I would sign on to work as a substitute school nurse.  However, with all of Ellie’s medical appointments, surgeries, and hospital stays during the past 2 years, I was never able to make the commitment.  Now that Ellie seems to be doing well, I took the plunge.  I can only work Tuesdays, Wednesdays, and Thursdays as that is what works with Ellie’s therapy schedule.  This is new for me.  I worked years ago as a PICU (peds ICU) nurse and then as a nurse practitioner.  School nursing is so different, but I like it so far.  There is a bit of a learning curve, lots of protocols, different school clinics set up differently, and I discovered that kids talk a lot.  Why this is shocking to me, I don’t know.  Maybe because my own 8 year-old doesn’t talk?  Seriously, the stuff that comes out of their mouths! I also was reacquainted with the games “rock, paper, scissors” and “I spy with my little eye”.  



Ellie has been in school for nearly a month.  The first week went well.  Now I am getting notes home from school everyday (along with the unhappy faces) about her being very distracted and unable to focus.  There could be a couple things going on.  One being her ADHD seeing as her medications have not been changed since she gained nearly 9 lbs and dosage is usually based off weight.  The other would be related to her thyroid.  It seems that the Synthroid (artificial thyroid hormone) probably isn’t where it needs to be, but we don’t retest her thyroid levels until October.  Ellie is exhausted.  Every morning I have trouble waking her up and every day when she comes off the bus, she looks so tired.  A tired Bear = cranky Bear.  Mornings, afternoons, evenings, and bedtimes are rough.  Weekends are slightly better because she can sleep in a bit, thus getting her required 13.5 hours of sleep.  One of the things that I have noticed, aside from being a crankypants, is that when she is tired, her ADHD seems worse.  So I wonder, do we need an ADHD medication adjustment or a Synthroid one or maybe even both?



I was going through some pictures of Ellie and came across ones from last year - her school picture and her allergy testing.  Looking at how skeletal she was.  How ill she looked with all of her ribs hanging out.  Then studied the pics from the beginning of this school year.  Nine pounds and 2.5 inches later, she looks so good.  She is still on the small side on the Down syndrome growth chart, but she is finally ON the chart! After a mention of a G-tube for supplemental feeding, if I had know Risperdal for her ADHD would “cure” her failure to thrive, I would have signed on 3 years ago.




Ellie has been taking her speech device with Proloquo 2 Go with her to restaurants and ordering her own food.  She hasn’t quite figured out that if you hold down the “sandwich” button, if gives you the option for “sandwiches”.  Ellie is getting creative:  “ I want sandwich is”.  



Bear turned 8 years-old a little over a week ago.  I cannot believe she is 8 already.  I sometimes feel like I am still in my 20s and can’t possibly believe that I am old enough to have a kid this old.  Other times, I feel like I am pushing 50 with all the white hairs I have been finding (I blame   Bear and my husband).  It was difficult trying to figure out what to get her for her birthday seeing as the only thing she really likes are those large milkshake-size straws.  So yes, she got straws and some winter clothes since she has finally grown.


Well, that is all for now.  Things are even keel and fingers crossed they stay that way!

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2 comments:

  1. Crossing my fingers too! It's so good to see an update. And a positive update at that. Keep up the good work Ellie!

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    Replies
    1. Thank you! It is good to be writing about fun things for once. I feel like there is always something medical going on with Ellie.

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